Episode 5: Advocacy
Standard Introduction
~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...
Lauren Fenton 00:17
This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.
Rina Teslica 00:24
I'm Rina,
Lauren Fenton 00:25
and I'm Lauren.
Rina Teslica 00:26
And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.
Lauren Fenton 00:40
Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget, we are talking from a parent's perspective, we would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.
Rina Teslica 01:00
Because really, what the f**k is normal anyway?
Lauren Fenton 01:15
Hello, and welcome back to another episode of the f**king normal podcast where today our topic is advocacy. Before we get into what we mean by advocacy, and why we've chosen it as a topic, we just wanted to say that this is our first episode since- or podcast episodes - since we went live. So for all the people who have listened, subscribed, given comments and liked, thank you so much, it really means so much to us. And it's why we're doing it. So we're really, really chuffed.
Rina Teslica 01:50
Thank you. And on that note, if there are topics or people that you think would be great for the podcast, please give us a shout on all of our social media platforms and let us know.
Lauren Fenton 02:01
More details will be at the end as usual. Perfect. So, what is advocacy?
So advocacy is defined as putting forward a case on someone else's behalf or on behalf of a cause or a policy. And I think most of us raising disabled kids will attest, we have quickly needed to develop this skill. It's not that you don't have to advocate for your children if you're a parent regardless, but it's just something that is so important when systems of support aren't always automatically or easily in place for your family. The world is largely not designed for disabled people. So in navigating this system, you have to champion, you have to persuade and shout loudly on our kid's behalf. There's so many instances, it's the school, therapy, hospitals, even the playground where you need to persuade or fight for the support that you need and your child, that your child needs. Perhaps most of all, when a child is nonverbal or limited in their own communication skills, and it doesn't end there. You most likely need to find others who can advocate for your child both alongside you and God forbid if and when you're no longer around. And then where possible. How do you teach your child to advocate for themselves? It's f**king exhausting. And in fact I'm exhausted just saying all of that.
Rina Teslica 03:25
Hear hear! totally attest to everything that you're saying, which is why we are so incredibly excited to have the perfect guest here with us to talk about advocacy. A lawyer and our friend, the wonderful Caroline MacPake or Withers professionally. She is a lawyer, as well as the senior sponsor for Virgin and O2's Disability Network. She's also a mum of two. She's mum to Rufus three, and Dottie who's five. And it's Dottie that inaugurated Caroline into the role of a SEN mum as Dottie was born with a rare genetic syndrome Mowat Wilson Syndrome. I'm sure Caroline will go into detail into how this condition affects Dottie, but I just want to say that she is the sweetest little girl I've ever met. And the Shakespearean quote, "Though she be but little she is fierce" is the most perfect quote for Dottie. So welcome Caroline to the podcast.
Caroline MacPake 04:19
I'm so glad to be here. And I'm so glad to be part of this and I'm excited for my therapy session to start!
Rina Teslica 04:24
Yes - Free therapy.
Lauren Fenton 04:28
Sorry there’s no couch!
Rina Teslica 04:30
But a cup of coffee will have to do . . . So let's start Caroline, why don't you share a little bit about Dottie and you and your life and everything that went on from kind of pregnancy? Up until now?
Caroline MacPake 04:43
Yeah, sure. Happy to. So Dottie is five at the moment - as you said, I mean, would I use the word 'sweet' to sum her up. Maybe, She's certainly fierce, she's a strong minded little lady. She's, she's a legend, she's cool, she, she knows what she wants and she knows how to get it. She is largely nonverbal as a result of her genetic condition Mowat Wilson syndrome. As you said, she has so much character and spirit, she loves music. She loves Queen and David Bowie, and she's just getting into punk music, which definitely sums up her general attitude. Matt, my husband and I often have to remind ourselves that us dealing with her firecracker personality is a small price to pay because that determination she has to get what she wants is something that's going to really serve her well and gives her the grit that she needs to overcome the challenges that she's got. So she is at the most amazing school for speech and language that is really, really helping, and she's doing really well in her communication. She also has some physical difficulties. She's got low muscle tone and hypermobility and some issues with fine motor, but she's overcome so much in her five years already. And we're so so proud of her. In terms of pregnancy, she was born at full term, it was a fairly straightforward pregnancy. She had some feeding issues, I couldn't breastfeed her and you have all of those hormones as a mother and that incredible pressure to do what you think is best for your child, which you know, having gone through all the NCT classes, kind of indoctrinated into breastfeeding, that's probably a whole other discussion in itself. And I really, really struggled. I definitely had some postnatal depression. But a lot of it was put down to kind of baby blues. I just had this feeling that something wasn't right. But I was told no, no, you know, you're worrying too much. family were kind of like had me down as a bit of an over worrying mum, which was something that hadn't been in my personality so far. So for me felt like a little bit unfair, like I was being sort of categorised in a certain way. So at her eight week check at the GP, the doctor noticed a head lag, which is often a sign of low muscle tone, so referred us to paediatrics.
Rina Teslica 07:14
So what what's a head lag?
Caroline MacPake 07:16
Oh, so it basically, they take a baby's two arms and pull them up. And if their head follows their body, there's like their neck strength sort of thing. So So if the head remained sort of floppy it's a sign of them being or having low muscle tone. So that was noted. And I kind of at that point went into overdrive. Red flag. Yeah. Oh, my God, there is something wrong and I need to do everything I can. So I was researching low muscle tone hypertonia. She got referred for a bunch of blood tests and other screening . .
Rina Teslica 07:48
. . because you were pushing?
Caroline MacPake 07:50
At that point, it has just gone through paediatrics. And so that's what they were kind of initial basic genetic. Standard Test. Yeah. And the doctor, amazing paediatrician said to me, well, hypotonia, or low muscle tone isn't a condition in itself. It's a symptom of what could be a different condition. But you know, don't get into overdrive trying to Google it, you know, well, you know, you'll see in due course, and everything else seems to be fine. So I did go into overdrive researching, like we all do. And one thing that I found was a Facebook group hypotonia UK. That introduced me for the first time to other parents who are living similar experiences, a lot of them looking for answers for this low muscle tone as well. And that's the first time that I felt like I wasn't crazy. There were other people that felt like me, and it gave me a lot of information as to what I was after I was hungry for information about what could this be? And yeah, like I said, it reassured me I wasn't this kind of fuss-pot parent that was looking for there to be a problem when there probably wasn't one. See, I felt validated it gave me a bit of confidence to keep pushing. So after that initial appointment where they did some blood tests, I got call from the doctor as I was packing up, Dottie was four months old and we were about to go to the Lake District for Christmas with my husband's family, ah, both our families actually and the doctor was kind of deliberately breezy said "Oh, you know, just come back to us. Well, we just need to rerun one one of the tests you know, nothing to worry about at this stage. But if you could come back in as soon as possible that would be great"
Rina Teslica 09:43
Why do they do that - most irritating thing ever? Like I just wish they would say on the phone just straight out straight up like look, there's a problem? Yeah, come back. Yeah. So you're not stressing the whole time and then oh . .
Caroline MacPake 09:55
and yeah, I guess they're trying to be like, not make you worry when they don't know but yeah, of course you're going to worry and you jump to the worst possible scenario. So yeah, I pushed well got to hospital, they run, they run the tests again, or they took, there was a urine sample they took again. And I said, just tell me what it is. And she said to me, okay, well, it could be nothing, or it could be. And the urine sample that we took could have been contaminated. There's something that you're indicating that there could be a particular condition. And I said, just tell me what that is. And she said, Well, I'll tell you what it is. But don't google it. Why they say don't Google it every time. And so I googled it. And it was just, it was a condition where children die in early infancy, they have a rapid decline and pass away. And at that point, I just completely fell apart. Yeah I haven't thought about it for a while, yeah, I'm, I literally lost, lost lost it. I said to my husband, I don't want to live anymore. I just felt like, I didn't want to kill myself. But you know, I wanted to be there for Dottie, but I just wanted everything to stop and go away. I just didn't want anything to exist anymore. But obviously voicing those concerns, the GP called psychiatric services, they came around the house, and basically, all of a sudden, this thing escalated into, okay, we're gonna check you into, like a mental health ward with and you can take your child with you, but we're going to check you in and I was like, hang on a second. No, you know, I take it all back. It's fine. I'm fine. I, you know, I was like this, this is what I need, you know, I'm not going to feel better to being in some clique ward. With my child, I'm going to feel better knowing what I need to know about whatever it is that she's got. And so that's when I guess the first time that I can think of that I firmly stood by what I thought was best for me and for Dottie, and I just said, no, like, back off. No, that's not going to happen. And then I said to them, what I'm feeling isn't some sort of psychological response it is a rational response to the fact that I've been told that my child might die. And they kind of said, oh, yeah, okay, that makes sense. Yeah.
Lauren Fenton 12:20
Yeah, Jesus, presumably, thank God that you were able to kind of put the stoppers on that and to know, at that time,
Rina Teslica 12:29
mothers in general just don't have enough support across the board. Let alone when you have a child with a disability, it's like non existent.
Caroline MacPake 12:39
And you think about so so it turned out for us that they reran the tests. And I found out, you know, a few weeks later, the worst Christmas ever, but apart from that small price to pay, you know, found out it was indeed a false positive and Dottie didn't have that condition. And I felt like there'd been a miracle. You know, I still think to this day about the people that don't, don't get that kind of almost second chance. And the people who, Yeah, who knows how those people have been dealt with in terms of the support that they've been given. Anyway, so, so yeah, that I honestly felt in that situation, like dodged a bullet I carried on with this kind of relentless research, I channelled it more into sort of therapy options for Dottie. Because I had a feeling I was told that 'there's nothing wrong with your child', but I had this feeling that she was going to need more support. So through that hypertonia Facebook group, a lot of parents had mentioned Conductive Education, which is brilliant physical therapy, if anyone's children has hypertension child has hypotonia, I definitely recommend looking into Conductive Education and I signed Dottie up to an amazing provider. You know, I would research lycra suits and therapy options and all these different things. I know that on previous episodes, we've spoken about how people, you can go into overdrive as a coping mechanism. I definitely did that and there were definitely raised eyebrows around my whole family: "okay she's becoming a bit obsessive with this whole thing
Rina Teslica 14:15
If you can't control anything you're going to control that!
Caroline MacPake 14:17
Exactly. So then her had genetic panel came back clear. And I was told you know all Yes, she does have some symptoms here and there. But really, they're all within normal ranges. Yes, she's very, very kind of flexible and she's got low muscle tension, but you know what, there's Olympic athletes who have got hypermobility, so, you know, don't worry, I really felt that I was being dismissed. I wasn't being heard. You know, I was being brushed off by all of the medical people that I spoke to. And I carried on doing this research I one time I was wrong about something but I, I convinced myself she had this particular genetic condition and I managed to track down the email address of the geneticist, I emailed her directly, and I said, Look, you need to test for this. I'm almost certain she's got it. So they called us in and said, Look, we don't think she's got it. But just for your peace of mind, we will i.e. we're going to do this to shut you up. So we'll run the test for you. So they ran that test, and it did come back negative. And I just thought, no one's going to listen to me now. That was our last chance to get a diagnosis. But then, Dottie was 15 months when I became pregnant with her brother with Roo, he's now three. And I, again, Matt, my husband was not sure about us having a second child, my parents died when I was kind of around 19-20. And my brother is the only family that I've got, I mean, thinking about Dottie and the fact that she could possibly grow up with some difficulties or challenges in her life. I just thought she has to have a sibling, she has to have someone who can be there for her, if we're not. And so again, when we can maybe slightly obsessive wanting to have another child . . .
Lauren Fenton 16:05
it's very natural, like we've, we've covered the topic of siblings - I’m sure you’ve listened to the Siblings episode. Yeah,
Caroline MacPake 16:10
Yeah, absolutely. Yeah, I, same as I think it was covered in now I feel kind of guilty that I almost created another human being for that purpose. But you know, Roo is equally as amazing, as Dottie and, you know, they fight all the time oh my God, they don't protect each other in the slightest - maybe one day. So I kind of used my pregnancy as another angle, then to get some more genetic testing done. So I called up or emailed the genetics team and said, I'm now pregnant, I'm concerned that my second child might have some of the same challenges as my first child, I think that you need to help run some more tests and agree to do whole exome sequencing at this point in time. Again, this was a different geneticist, this time, he looked at Dottie and said, there's nothing wrong with this child. But we'll run the test for your peace of mind. Clearly, you are. Clearly you're, you know, a worrying mother, but you're pregnant. So we need to take this seriously. So Roo was born just before Dottie's 2nd birthday. By that point, it'd become clear that Dottie did have something going on. So physically, she wasn't walking yet. She wasn't talking. She hadn't progressed between. Beyond age one, she sort of said, Yep, no, and then no more speech. And she was making really good progress with Conductive Education. But you know, it was it was clear that there was definitely something going on, to me at least. And I think Roo was about three months old, and I got a call out of the blue from the geneticist saying, 'We've got diagnosis for you. It's Mowat Wilson Syndrome, don't google it'. Literally,
Rina Teslica 18:05
Did you?
Caroline MacPake 18:07
Of course, I did. And I sat there in tears, because what I read was, you know, your child's gonna remain nonverbal for life, the children that I read about in, you know, these kind of medical case studies, were all very, very severely disabled. She wouldn't live an independent life. And yeah, we went to the geneticist who - I don't know if all geneticists are like this, they're obviously very intelligent people who are very focused on the science of that particular aspect of medicine, and they’re not focused on the patient bedside manner. So he kind of just He treated Dottie as a diagnosis. He didn't treat her as a human child, he, she was in the room with us, and he didn't look at her once. And instead, he kind of reeled off, she won't do this. She won't go to university. She's going to need care all her life, literally a list of the . .
Lauren Fenton 19:01
and you've got this little two year old next to him. Yeah,
Rina Teslica 19:03
. . and all you're wanting is some positivity in that moment.
Lauren Fenton 19:11
How can you be that prescriptive on a child's outcomes? That's just not . . .
Caroline MacPake 19:18
It was so definitive, so definitive, and I was like, 'How can ? - look at her - she's, she's communicating. She's not talking. But she's communicating. You know, she's kind of engaged with everything going on around her. And he's like, No, he actually drew a chart. I said, How can you tell me that - is she going to decline? Because she's actually doing really, really well. He drew this chart that actually just broke my heart. It basically said, Well, here's how children like Dottie's kind of cognitive abilities go you know, you start off and all children's cognitive abilities are low to begin with, and most children's will go like this in a sort of diagonal line across the chart, and Dotties will appear to track it at first, but then we'll just get further and further and further away from what a normal child would achieve. And I just thought, oh, okay, well, that's that then.
Lauren Fenton 20:06
Do you need somebody to draw that. Like, even if statistically some of that was like true.
Caroline MacPake 20:16
Yeah, I just don't understand it - it really felt like he was dashing every hope. Every time I said something, that could be hopeful. Yeah. It was like he was kind of squishing it down and saying, no, no, no, you need to manage your expectations.
Lauren Fenton 20:27
How did you react in the room? Did you - was that another?
Caroline MacPake 20:30
No, it was one of those situations where you feel overwhelmed. And especially in front of like an eminent geneticist who clearly is very, very intelligent, and knows his stuff. I kind of I did you know, you have the those sort of fight or flight responses. I didn't have a fight response. In that moment. I just had this kind of, like, overwhelm where I didn't say anything. I wish my husband and I - he actually sent Matt out of the room at one point with Dottie and Matt afterwards said 'I wish I told him to fuck off when he told me to leave the room', because that's when he did the chart thing. But we just blindly followed what this doctor . . .
Rina Teslica 21:10
. . like intimidation. Yeah. The minute that they have that consultant, Dr. thing, yeah, you kind of have to sit in a corner and listen, yeah, which I think now that we've been in this world for much longer, we know how to advocate for our children much, much better. And I feel so sad for myself and for you in those early stages, because you just don't know how to react in those know, awful beginnings.
Caroline MacPake 21:37
I mean, he said the most bizarre things. He said - she was two - And he said, 'You got to think about contraception for her'. And he said something like, I think this is just about verbatim, 'these people can reproduce. You know, if she has a child, it's got a 50% chance of having this syndrome'. And I was just completely, like it was, that didn't sink in until after I'd left the room. After I left room. I was really angry - I wanted to write a complaint about him which I never did, because I don't think he actually intended for it to be offensive or upsetting. But, you know, he was trying to manage expectations. But yeah, I just the way that those sorts of medical professionals can communicate, you know? Yeah. He also said to Matt and me, 'Well, you should be prepared for this to impact your relationship as well, because most parents of children with disabilities this severe, will end up getting divorced'. Well, thank you very much for your therapy
Lauren Fenton 22:38
Do you feel like they must have a lot going on in their own life? like, Mr. doom and gloom. I mean, Jesus Christ.
Caroline MacPake 22:44
It was literally like, come to me and I will write off your entire life. Yeah. So so yeah. And I think that did I mean, you know, that the whole combined experience, obviously affected me really severely. And I remember lying in bed thinking, Well, that's it, my life's over. I just wanted to change how things were going for us and what what I felt had happened to us, you know, nothing had happened to us - Dottie was born with this condition, right? It happened at conception. So it's not like all of a sudden aged two something happened to us. And I just remember feeling so bitter and resentful of other people thinking about my family and about my friends, people that I love, thinking 'fuck you' to all of them, like, how dare you, you know, go around in your wonderful privileged life having not having to even think about what this feels like. And you've got children that are healthy, like, how can you know you don't appreciate that you don't understand what it's like for me and what we're going through right now. And just feeling really kind of ugly about the whole thing. And then feeling shame for feeling that way.
Rina Teslica 24:01
Which is perfectly normal. Yeah, I felt the exact way. And I told my friends, I was like, half of my friends had children. And the other half were Single Pringles. So I was in the middle. And I said to my friends who have kids, I don't want to know about your children. I don't want to see you. I don't want to see them. Leave me the fuck alone, because I cannot handle it. And they respected my wishes for a good like two years. I just couldn't handle seeing even to this day, like I had a blip when Lua was last in hospital where I was like, I fucking cannot stand seeing kids that don't have appendages right now. It's just too much because of what we were going through with Lua. I think that's just such a normal reaction to have when you're going through something so shit. Yeah.
Caroline MacPake 24:45
It's not just - I don't want this for my child. I don't want this I want it to go away. I wish I could change it. And as a parent, you want to do what you can to make your child's life happy. And you think that this is going to be something that's a barrier to their happiness. They're never going to be happy because of this. And yeah, I think the only thing that made me feel better was when I was actually with Dottie. I didn't think about that. I thought about her and she was happy. Yeah. And, you know, to this day, she gives the best cuddles that sometimes she'll slap you in the face afterwards. But sometimes she wants something in return. Like, so that that's what made me feel better. And I think a lot of what I was feeling or was also self pity. It wasn't just pity for her. It was pity for myself that my life had gone this way. And I just thought I was worried about what other people would think about me and our family. And you know, how they would judge us and maybe think that we weren't good enough because we had a child with a disability. And yeah,
Lauren Fenton 25:59
that's, that's cuz, yeah, it's your life up until that point, you've been socialised and lived in a world that has judged people . .
Caroline MacPake 26:09
Yeah,
Lauren Fenton 26:10
It's completely natural to feel like that totally, like, Thank you for sharing all of, those moments of real vulnerability, because I'm sure all of us have felt like that at times. And it's yeah, it's horrific. And it's but it's normal. Yeah, it's f**king normal. It's f**king normal to hate the world. Yeah. And I used to always have this thing of just wanting and I don't know why it was a cardboard box. But in my head, I remember saying it to Patrick as well. I was like this, like, image or, like, vision of me and my two children climbing into a cardboard box to hide away from the world. Yeah, and just going there quite a lot in those early days.
Caroline MacPake 26:49
Yeah, it's like protection. Yeah, you want everything else to go away and for your little bubble to exist. Exactly. Yeah,
Lauren Fenton 26:55
exactly.
Caroline MacPake 26:57
So yeah, I was kind of feeling pretty shitty, at that point in my life. And I had kind of met, established a dialogue with a few mums through the hypertonia Facebook group that also lived in London. And, you know, wasn't doing anything else my sad life. So decided I'll meet them for coffee, and met up with these women, and their amazing kids. And the immediate comfort I felt was how normal they were, these weren't pitiful people who lead sad lives and their children weren't pitiful, sad, human beings, you know, different kids have different disabilities. But they were cool. And I kind of felt like, Oh, these would be my friends, if I met them at work, or socially, like, these are normal people. And that's where I think, you know, the famous Whatsapp group that we've spoken about sort of took off. And I think, really, yeah, it kind of gave us all maybe a kind of insight into the fact that, you know, although our children have different things going on, there's a shared common experience at some of the things and the feelings and experiences that you go through. And it validates you feeling that way. And it's okay to feel that way. Because sometimes it's shitty. And the other thing is that having a group of like minded people, whether that's true, you know, and I've had similar experiences with the Mowat Wilson family, Facebook forums, there, there are different groups out there for depending if you've got a diagnosis, there's other organisations, if you don't have a diagnosis, there's places that you can turn to where people are going to be the same thing as you. And those people are normal people. And so I think having people who understand you that you can turn to is like having someone that's always in your corner, and give you confidence to push for what you need to do. They can tell you that you're not crazy. And yeah,
Lauren Fenton 29:12
I really hope that that's, I mean, that's the kind of raison d'etre of the f**king normal podcast, it's were we've come from, so yeah, we might be talking to all of you. You're all f**king normal. We're f**king normal. None of us are alone. We have got you.
Caroline MacPake 29:28
Exactly. And I think, yeah, some of that, like I said, the shared experiences can uncover that actually some of the system's fucked up. It's not it's not what you are doing or not doing it's the system that's broken. And so it gives you some passion to fight against that and to do something about it or to change . .
Lauren Fenton 29:46
. . . even maybe to advocate
Caroline MacPake 29:48
Exactly. So yeah, so fast forward to today. Dotties five, she's doing so well. I feel at peace with where we are to be honest, because I know it’s just life. And it's gonna be okay. I get emotional saying it because I never thought that it would be okay. But it really is there's still, you know, some rough days some struggles. But you know, I know that I'll get her what she needs. She's happy. And life's pretty normal and pretty good
Rina Teslica 30:24
Aah music to my hears . .
Lauren Fenton 30:27
you're making us all cry . .I mean, yeah, thank you so much for giving the podcast your background . .
Caroline MacPake 30:33
. . yeah I get so emotional talking about the happy stuff.
Lauren Fenton 30:36
It's when somebody says 'are you, okay?’ And you say ‘don’t say that to me, I’m going to cry!’… But you've talked about a number of times, early on, when you have had to kind of advocate for you and Dottie, Not to force it, but coming back to it. But to come back to the topic of this episode. What does advocacy mean to you as a parent to Dottie?
Caroline MacPake 30:58
Well, I think as a parent, like, like any other parent, not necessarily a parent of a kid with a disability, you feel a responsibility. And your role is to get the best for your child, like every parent wants the best for their kids, of course they do. You want the best education, and you want them to have the best opportunities in life, you want them to reach their potential, basically, whatever that might be, you know, whether your child's going to be a neurosurgeon or an artist, or just be happy, that's what you want. And so, you know, as parents, you have lots of different roles, your a carer, a teacher, bank, taxi service, and we're all advocates for our kids, until hopefully, they get to a position where they can advocate for themselves, so they can be independent. I think as a parent of a child with additional needs, you don't know if often, if your child's going to reach that level of independence. In my case, my daughter literally can't speak for herself. So I have to speak for her. And I have to be the person that gets her what she needs. As you said in the intro, Lauren, the world really not been designed for disabled people. And so there are barriers everywhere. And so as a parent of a child with a disability, you start to see some of those barriers really early on in their life. So I think there's there's different types of advocacy, right, there’s advocating medically, as I was kind of talking about in terms of pushing for a diagnosis, or access to therapies or treatment, you can often be dismissed as a parent pushing for a diagnosis, or a treatment, and you have to advocate and push for what you feel your child needs. Sometimes you have a gut feel as to what they might need, you know, as a parent, or, as a mum, it's cliche about mum knows best, but really, you know, your child so much better than any medical professional, you know, they know what they know from studying hard for a medical degree, and reading medical journals and reading things that are written down but you know, your child, they don't know your child,
Lauren Fenton 33:08
thank you and your story, as you've described it, it was your gut. Yeah, okay. Sometimes the gut took you down on like, slightly different path. But your gut was on ultimately telling you, I need a diagnosis, I know that there's something more going on it is so so valuable to, to have that and to feel you can trust it, I think there must be a lot of people who don't have such a kind of positive outcome in terms of getting answers as you do.
Caroline MacPake 33:39
And it makes you think doesn't know doesn't, you know, like to say I'm a lawyer, so I am actually trained to argue to put my case forward and assimilate a bunch of information, and to critically assess it and to basically get an outcome. And I, you know, in that meeting with a geneticist, I froze up and I couldn't ask the questions that I felt I needed to ask and I took what he told me at face value, and you think, Okay, well, what about people who have culturally or otherwise personality wise, you know, I'm not the sort of person that likes confrontation, and will just take what is given to them at face value
Lauren Fenton 34:20
completely. It can also be kind of that educating yourself of what rights your child has. So you take it at face value, but maybe feel that they need something else. Yeah, but you don't realise that they have a right to something else that you you have a right to say no. To ask for a second opinion, or to challenge what school provision has been put in place for your kid. If any has been put in place. Yeah, it breaks my heart to think that there are so many people out there that aren't . .
Caroline MacPake 34:51
. . totally and yeah, I mean, when you're advocating for rights in in general education is a big one right for any parent ever. A SEN or disabled child, you know, oh my God, you could have a whole episode on EHCPs . . and on the battle . . . Yes. But you know, my daughter, So Dottie can't speak, but she can communicate, she's got a lot to say. And she wouldn't be able to survive in a mainstream education - mainstream as it stands today, because, you know, guess what the education system hasn't been set up or designed to include all children. And so Dottie can't speak and therefore be excluded from a whole big part of the curriculum. And what she needs is specialist support to access curriculum. So people that sign, you know, different provision around, you know, like technology to enable her to communicate, the system isn't built to offer that to a child, you have to fight for it, you have to, in most cases, go through a legal process in order to get it. And then I guess there's wider advocacy, there's advocating for those who, like, as we said, might find themselves in similar situations and find the system stacked against them. So you kind of want to help people to understand what they can do to help themselves and their children. And then maybe it is advocacy in a strict sense is probably more allyship. But like doing what you can to change wider attitudes in society and make the world a more accepting place for your child to grow up in be that, you know, attitudes of children in the playground or attitudes of, you know, culture in general. Yeah.
Rina Teslica 36:43
That was a that's a big one. Because, obviously, coming from an Eastern European background, like disability is such a taboo, like, there are still people who view disability as like, the worst thing in the world and will hide their children away, God forbid. But when Lua was born, I think my family struggled initially with the diagnosis, like just the word syndrome was like, oh, fuck, what is this kind of how could this happen? What is it de de de? And like, I started to blog about it. And I was very active on social media, because I had a big, not a big following, but like, maybe 500 followers on Instagram, but 80% were from Kosovo, and Albania. And so I would post a lot about my life with Lua just to show that this is normal. Yeah, it's my f**king normal. It's not a big deal. Well, then in the beginning, I was like, f**k me. I hate my life. Yeah. But over time, once I started to accept my reality, posting about it, and I had so many messages of support from other Albanians, just saying, wow, like, wow, this is amazing talking about. And so, from afar, you're changing perspective on what disability is, yeah, your making it less. not attainable, but less out of reach and out of touch with life . . Yeah. Which is something I'm very pretty proud of myself. I know, it sounds so silly, but like, changing how you view things . .
Caroline MacPake 38:12
. . and celebrating things. So your, your, your Instagram celebrates Lua, right, her sassiness, you know how amazing outfits. But, you know, it shows that like, this is my child and I'm proud of her. And you know, that that is powerful in itself, for other people to see that as you say, in some societies, I think, you know, even in the UK, I think older generations, I'm not sure that all of my family has accepted that Dottie has a disability. It's not spoken about throughout my entire family, it's just something that, you know, - just leave that to one side - drives me fucking mad, but you kind of go okay, everyone's on a journey of acceptance, and you can't necessarily immediately bring someone to where you are. Yeah - drives me crazy.
Rina Teslica 39:00
So Lua's in Kosovo right now. And I was talking to my mum and dad, because I'm very excited for my grandmother, my grandfather to meet Lua, they're 90 they are from a completely different generation. And my dad was laughing. He was like, yeah, be prepared. And I'm not even offended because I understand how they view the world. They are so far removed from where we are now to where or how they were brought up. So I'm conscious of the fact that they will view her as different and potentially kind of, you know, odd and be a bit difficult maybe, although I'm not there to see at the moment. I'm conscious that that that is still something is a fight to this day.
Caroline MacPake 39:50
I bet though they'll spend half an hour with her and they will just fall in love with her and she will just be Lua right? Yeah.
Rina Teslica 39:58
Her new thing is literally be taking their hand and kissing and asking them to kiss her cheek. So I know she will be like working her magic - it's nuts.
Lauren Fenton 40:07
Ah charm. So you know, getting back to your professional capacity as a lawyer and having those skills to reference. And you refer back to the geneticist moment as being a time when you froze since then, and since her diagnosis, what's been the most challenging time for you when you've had to wear that advocacy hat?
Caroline MacPake 40:28
So definitely the process to get her EHCP. So, yes, I'm a solicitor, I went into law, because I've always been an argumentative, argumentative, difficult person. I'm a cynic who, you know, won't take at face value, what someone tells me, You know, I want to make my own judgement about something. And I kind of heard through the grapevine on these different forums these EHCPs, or education, health care - shoud we explain what those are? . .
Lauren Fenton 40:59
yeah, we I mean, we've mentioned EHCP's in other episodes, but for anyone listening, afresh to this episode. In the UK, it's basically a a legal document that gives your child the right to education. Yeah, essentially, and specifies what their needs are in an educational setting, and how that will be provided for
Caroline MacPake 41:22
Yeah, it's basically a contract with your local authority to say, this is what you have to provide for my child. And so you need that document in order to access certain types of specialist provision. And I knew that Dottie had a diagnosed condition where most children don't end up talking at all. So I thought it's an open and shut case. You know, I was really casual about it. I've just downloaded a form off my local authority website, filled it out, sent it off, I thought, okay, great. They'll send it my back. And we'll have an education healthcare plan, and I'll be able to get her into the school that that I feel that she should be at - Yeah - um Wrong.
Lauren Fenton 42:02
If only. If only it worked like that.
Caroline MacPake 42:07
Yeah, I was completely bowled over when I got a response, saying we're not going to assess your child because we don't think there's even a chance that she will need a specialist provision. And so it was at that point, I started getting my legal advice. And I realised that what I'd done is not advocate for her in a legal or professional sense. I've advocated for sort of as a mum. So in the bits on the form that say, what are her strengths? I'd gone to town and I'd written, she's highly engaged socially, and on the challenges so Oh, yeah, I think she can't speak. Because I was proud of her. And I was proud of what she's achieved so far. And I wanted to shout about that and tell someone about it. But yeah, that is the wrong approach.
Lauren Fenton 42:56
So natural. And yet they tell you I heard this advice a few times. I'm sure you have as well. You've got to write it as they are on their worst days.
Caroline MacPake 43:07
And it's true, because otherwise, you're giving them an out? Yeah, basically, what I discovered completely shocked me, which is an absolutely fundamentally broken, f**ked up system that is based on budgets and budgets alone. No one cares about the child at the heart of it, no one cares about giving that child an educational provision, all they care about is allocation of budget. And these people were basically tasked at the local authority to find a reason not to give you that budget. That is shown in the fact that 95% of cases that go to appeal, find in favour of the family. So 5% of those cases, the local authorities acted correctly, 95% of them, and those are the ones that went to appeal those so if you go to appeal, you have to pay a fortune in legal fees, or spend a lot of time and effort yourself to represent yourself. So only small number of cases will go to appeal. So there will be 1000s of children out there who are not getting support to access education. That's their fundamental human right. Makes me so angry and as a lawyer, you know, and a mum who would run through brick walls to get my kid what she needs. I still had to pay a professional to strategize to get to what we need to do. We got what we needed. We got the EHCP she's at an amazing school. Now when she's absolutely thriving. She's just finished her first year there and oh my god, it's having the most miraculous impact on her. I dread to think what would happen if she wasn't there?
Lauren Fenton 44:46
Yeah. And that's the case as you say that 1000s of children I mean, it just breaks my heart. And not to extrapolate too far but that's in the UK as well. So there's thousands of children In the UK that aren't getting it - other countries around the world there aren't the systems in - however f**ked our system - there aren’t even those systems or support in place. Worldwide how many children… it doesn't bear thinking about
Caroline MacPake 45:16
as a lawyer, I like to think I've kind of got this barometer for what's right and wrong, and you know what's equitable, and that that whole thing just made me sick to my stomach thinking, I basically paid my way into getting what she needs. Because I'm in a privileged position, I can do that. I felt so guilty about the fact that, okay, well, I'll get Dottie what she needs. But what about all of these other children? And, um, what what can I do? What can I do to help those families because this is just wrong.
Lauren Fenton 45:46
And so you are doing stuff aren't you?
Rina Teslica 45:49
. . tell us about that?
Caroline MacPake 45:50
So look, I started to do what I could to basically take what I've learned from the experience that I had to help other people. So if I saw someone on a Facebook group or a forum saying, I'm struggling with, I've been rejected for an assessment for my child, I would DM them and say, like, tell me all about it. And I'll try and help you. And so I think there were three or four people actually, we got successful assessments for and they got their EHCPs. And it was great. But it was just I felt like it was a real drop in the ocean. And I was like, Why, like, I actually thought about going through a process at work where company on the workforce was merging with another one, and I thought I might get made redundant. And I did actually think maybe I should quit work and just do this. But then I realised that I won't be able to pay my bills or my mortgage. So maybe, you know, Exactly, but I wanted to do something. And I discovered through my network of legal contacts that actually, some people that I had known throughout my career had set up a charity. So throughout lockdown, they discovered the same thing. Someone that worked through with them went through the process of getting the EHCP had also been horrified by how fundamentally wrong the system was. And unlike me, who was struggling to find a way to help, they'd gone ahead and set up this amazing charity. So Support SEN Kids is a charity that basically aims to use legal technology to provide access to the law on a free basis to parents to enable them to advocate advocate for their children to try and, you know, help them save themselves from going down a very expensive legal route to basically democratise the information they need to advocate for their child's education.
Lauren Fenton 47:41
That's amazing, we'll put the details in the show notes as well.
Caroline MacPake 47:45
Yeah. And I think we've spoken about community and the idea of Support SEN Kids is that it creates a community. So if you go through the process of an EHCP join the website, ask a question, you'll get a question you'll you'll get people who will answer your question for us. It's a community of people who will help each other through shared experiences. There's also access to some lawyers online that can help. There obviously can't advise on specific cases, but they can help answer questions, again, opens up with a guide on SEN law. We're producing more guides on things like disability discrimination, how to write a will, or useful things that can help a parent to put themselves in the best position to advocate.
Rina Teslica 48:29
That sounds absolutely amazing. I'm so proud of you.
Lauren Fenton 48:31
Yeah. Wow. I don't know where you get your time and the energy to do all the things you do. Yeah,
Caroline MacPake 48:37
Yeah I feel very guilty, because I don't spend as much time as I really ought to . .
Lauren Fenton 48:41
No - And there's only one Caroline, you can't replicate yourself. Do you feel like has it changed has has your ability to advocate change? Do you think as she's got older, there's been this battle for the EHCP that you described? And obviously, you're now doing all that amazing work as an allyship and helping other people to advocate for their children. But do you feel like you've got to a place now where you really understand how to navigate the system and challenge . . . . .your bullshitometer? Yeah, there you go. Rina has a bullshitometer. We all need a bit of Rina's bullshitometer in our lives,
Caroline MacPake 49:26
I think the bullshitometer is a really great way of looking at it because I think you can as an advocate, and as someone who passionately obviously believes in getting your kid what you want, you're very emotionally attached to it. And sometimes you can be at bit too emotional and you can go through having all of these experiences of having to f**king fight. You know, like people joke about mama bear kind of running through walls, but you can get into a place where everything feels like a battle and So yeah, you go in as attack is the best form of defence and every person you meet be they medical professionals or people at school. You know, whoever you go in there with this kind of aggressive mentality of like, F**k you, I'm gonna get what I need out of this. And actually, that's, that's not always the best approach, I think, you know, sometimes that's what you have to do. But that's exhausting. And having that mentality is exhausting feeling like, feeling like you're in a constant battle is exhausting. And I do think it is about picking your battles.
Lauren Fenton 50:36
Absolutely. And you getting the right outcome isn't always going to be by going down that route, fight, fight fight, I find certainly, you know, certain medical settings, certainly when you're trying to get legal, you know, EHCP type support, it's important to fight and have your game face on. But in education, I found examples where it's been much more subtle than that. So Bea is really happy at school. And she's doing really well. But I've found time and again, I've had to advocate in a slightly more subtle way, in terms of like raising their expectations for her. Around reading, for example, a bit like Dottie Bea just didn't speak much at all, until very recently, where she's able to speak a bit more certainly in in the home. But she has huge communication challenges. And I felt like with that, I didn't see that as a barrier to her learning to read if she can do it. And she wants to do it, I'm going to do everything in my power to help her to read. And she loves books. And she always was just like sitting pretending to read books like following them with her finger the words and stuff. And so that's something where at school, I have been a pain in the backside constantly trying to encourage different ways of exploring it and doing it because I just feel like I'm not going to sit back and wait for her to be able to speak more words until she reads because that could be a long time. And every kid has the right to to try and access literacy. So yeah, I feel like it's about setting setting a higher expectation for your child sometimes.
Caroline MacPake 52:31
So you do that like at school Dottie school is awesome. The staff there are just - I love them all so much - I cried at her annual review just thanking them all. They see her as an individual, they don't see her as having a specific syndrome or condition they see her they really really see her. But likewise, you know, so she's in the care of - she's in the care of the people at school. You want to be respectful. Yeah, you don't want to piss them off. But you you want them to up their game sometimes . .
Lauren Fenton 53:04
it's the nudge isn't it? Yeah, it's like, and I do share videos of things that she's done at home that I think are amazing. Yeah, to kind of say 'look like she can do this'. Yeah, I mean, it might be a bit of a control freak in me as well, I'm not a teacher, but
Caroline MacPake 53:22
you can say that about anything. I'm not a doctor, but you know, you, you know Bea, and you know, in your heart of hearts, what she's capable of, and you know that she's got great potential. Yeah. So, yeah, there's nothing wrong with keeping people on their toes.
~music “wake me up loud as clouds, all my love for you”~
Lauren Fenton 53:48
So in terms of other assumptions of other people that you've had to challenge, Caroline, has there been other examples where you've had to go in and, and question or challenge the assumptions people have made?
Caroline MacPake 54:03
Yeah, well, I think generally, a big learning for me have, you know, as as a parent of a disabled child is being able to have a reason to have insight into the disabled community generally. And through my work. So my position in my professional life, as I think Rina said in the introduction, I'm a sponsor of our Disability Network. And through that, I've just had the opportunity really to have some really, really fantastic conversations and to learn myself from some brilliant disability activists from disabled adults in the workplace. And it was through that, that I first learned about the social model of disability. And when I was told about the social model, that was a real lightbulb moment for me because it shone a light And made me realise myself in terms of challenging my own assumptions explained to me entirely why I've had such a difficult time in accepting Dotties diagnosis in the first place.
Lauren Fenton 55:13
Yeah, is it worth just… I'm sure that most listeners will understand what the social model of disability is. But if you could just in like, a sentence . .
Caroline MacPake 55:22
I'll do my best to explain in a so,
Lauren Fenton 55:24
well, the world is totally f**ked up, basically . . .
Caroline MacPake 55:25
. . .I think totally that is the best way - That's in summary, absolutely. So the social model basically teaches you that a disabled person isn't disabled by their condition or their impairment be that you know, something physically or cognitively or otherwise, they're disabled by the societal view, and all of the barriers that exist in society. So the stigma around disabled people that this that, you know, disability is a dirty word, or the disabled people are somehow broken, or they need to be fixed. So if you, you know, classic example, if you're in a wheelchair, then you need to be fixed, you need to be enabled to walk not that the society needs to change so that there's access for you. And so that, you know, you're able to do travel around and do what you need to do through the tool of your wheelchair, the wheelchair is what enables you to access but you know, the, the world, as we've said, is not built for disabled people, it's built for a certain type of person, and that person is genuinely an able bodied person. So the person wouldn't in that case, wouldn't be disabled by the fact that they need a wheelchair to get around. They're disabled by the fact that there's no access, and that society views them in a certain way, and the opportunities are not available to them. And so it's that that made me realise that, you know, Dottie doesn't need to be pitied. In fact, Dottie doesn't need to be changed at all the world needs to change and attitudes need to change and society needs to change and my attitude to disabled people needed to change. So, you know, just like I was frustrated, that that geneticist didn't see her he saw her just as a label or a diagnosis and not as Dottie. I remember really clearly, our first appointment with our community, paediatrician who was amazing after having seen that, that geneticist, and I was in pieces, and she said to me, I'm not treating a syndrome. I'm treating Dottie, and I was like, I love you.
Lauren Fenton 57:35
So why can't more people say things like that?
Caroline MacPake 57:39
Exactly. And that, in itself made me realise, but that is her treating Dottie, you know, through, not a medical medical eyes model of disability, but seeing the patient in front of her. So yeah, so that. So seeing that social model of disability, having those light bulb moments through these conversations with wonderful people, has changed my view of disability. And it's made me really passionate about changing attitudes in the workplace, and in society as a whole. As a result, you know, we all want to make the world a better place for our children. And I think as a parent of a disabled kid, do you want to change those attitudes so that your child can grow up in a better place?
Rina Teslica 58:23
That leads us really nicely into how you're teaching Dottie to advocate for herself? Because I think that's incredibly important.
Caroline MacPake 58:31
It Yeah, it is important. I don't have all of the answers on that at all. I wish I did it. So a really difficult question. It's one that I'm sure you're both conscious for Bea and for Lua as well, because, you know, it's basic good parenting that you want to give your child everything that they need to be independent, but when your child is disabled, you will your automatic response is to want to protect them from the world around them. And so it's hard to try and enable them to be able to do that for themselves. Also, because in some cases, you don't know how capable. In Dottie’s case, I don't know how capable she's going to be in the future to advocate for herself. I don't know if she's going to be able to talk or not, no one's going to be able to give me the answer on that time will tell. I know that she has a lot of attitude. You know, she she knows what she wants. And so I've got to enable her to be able to communicate that to people. And there's so many contradictions as well when you're trying to empower your child from a medical perspective. You know, how do you teach your child about consent and being able to and then being empowered to say no to an unwanted physical interaction, when, you know, the next day you might have to hold them down in order to you know, be cannulised to get to receive you know, critical medical treatment? Yeah. Dottie was in hospital and Um, a couple of months ago, I had to, I think, physically restrain her and hold her down. I think it was 18 times in four days I counted. Because she kept popping her cannulas. And she was screaming at me mummy, no ouchy mummy, no, please. And it breaks your heart. But you know, you have to do it. So you do that, because you're advocating that's the best thing for your child in that moment. But then the next moment, you're saying it's okay to tell people No when they when they want to touch you and you don't want them to.
Rina Teslica 1:00:31
I've never thought of that that way, like, yeah.
Lauren Fenton 1:00:36
So yeah, similarly, Bea's been going through a particularly tricky phase in the summer holidays, I think lack of routine is probably playing into she's a bit tired. I don't know, I don't know what's going on. But today to get her out the house, I just in the end, gave up and picked up her shoes, picked up Bea and like, pretty much like firemen lifted her to the car. Which wasn't great - But you know that exactly what you just, I mean, it's obviously less about medical needs. So, you know, harder to explain or justify, but I just needed to go because we were going to be really late. And I tried everything else. And it's really hard, I think as well, when they can be quite. So teaching them to advocate for themselves. I think him now in like sort of, I guess less extreme examples, but maybe when they're playing with other children, I find that really hard as well, because you can't really Bea can be quite passive. And so then you try and get involved to try and let you know, get other children to include her. But then that's you know, you don't want to be like forcing other children to play with your child when it's not easy to communicate with them or to Yeah, for it to make it work. Olivia is very good at that with Bea Olivia, as the older sisters really good at it if she's playing with like cousins or friends or whatever to include her, but I don't know how much longer that'll last given you know . .
Caroline MacPake 1:02:14
I think that's this the same for typical kids isn't typical, you know, in the same like both the consent thing, you know, I had to restrain Dottie’s brother flying in the plane because he will put his seatbelt on. Also, as you're talking the one thing that really struck me also on our holiday recently is that, yeah, I would normally be really protective about Dottie playing with other people. I'd want to know what they're saying to her. They're asking her questions about why she can't talk to her. And I think learning from me on holiday, she made friends with these two kids in the pool. Through no interaction with me, this little girl came over to her and I heard her say to her “hello friend”. And they took up this friendship is these two girls were lovely. One was six, and one was three two sisters. And Dottie had this like this amazing friendship with them over the course of about three days, they turned out to be staying in the room next to us. And were passing notes to each other under the door. I was worried that they would be asking her or me why she couldn't talk or why she a bit different. But no one asked me that question. The other parents didn't ask me that question. They were just totally accepting, you know, let her get on with it. And it was lovely. So you know, she's she's okay
Lauren Fenton 1:03:33
That’s amazing. Yeah. And actually, maybe as well as the lesson, I think it's very easy, because you spend so long fighting on behalf of the child and for what your child needs and advocating all over the shop. Sometimes you need to let go a little bit and just let them find their way.
Caroline MacPake 1:03:51
Yeah, yeah, absolutely. I think, you know, the thing that, you know, we're just having a lovely, uplifting part of the conversation. I'm about to bring it down to earth for the masses with a massive thump. But one of the massive fears that you have and that I'm sure any parent who's listening who has a disabled child is what what happens when we're not here anymore. You know, how do we make sure that we've provided for them after we've gotten in like, any parent when I'm laying awake at night, many times crying my eyes out thinking, who's gonna look after her what's going to happen? after we're gone? Every time I have like the slightest health issue. I'm thinking, Oh, my God, what if I die and who's going to look after? And I was having a conversation with Matt, my husband and Dot heard once again managed, so you will say no to her, and she will find a way somehow of getting what it is that you've refused her. She is a world class negotiator. You're going to a shop and you say to her, you can have one thing and you always leave with at least two things. And she'd managed to get herself something that we both said no to her and I just looked at Matt I said she's gonna be, she's gonna be okay. Isn't she this kid's got it sorted. She knows how to manipulate situations to her advantage. Yeah, maybe she doesn't need to be able to talk to do that. She's She's, I think she's gonna be okay. So yeah, maybe is a huge part of letting go. Right. But that's a hard thing to do.
Lauren Fenton 1:05:21
Yeah. And think it will be for a lot longer. Yeah, forever perhaps. Yeah. Is there anything else that you wanted to say?
Caroline MacPake 1:05:29
Just one other thing on, as we're thinking about what happens after we've gone? I do hope that I mean, Dottie, I'd like I said, before, you know, we had, we had another child because I wanted Dottie to have a sibling, Dottie's also got some amazing cousins who she adores, I really hope fundamentally, that they learn that growing up with a disabled cousin, or sister is, you know, they treat it as something that's totally normal. And they don't even have to think about it. They don't even have to consider the social model, because they just are accepting of not just disability in all its forms, but of any difference. And yeah, I guess that's just the long, longest hope that in the future, maybe there'll be less of a need to advocate because attitudes and people will have changed. And hopefully, they are changing now.
Lauren Fenton 1:06:22
Yeah. But until then, like, I would love you on my team. Lucky Dottie has an amazing person fighting for her, so
Rina Teslica 1:06:30
Amen.
Caroline MacPake 1:06:32
Thank you. Wow. You know, all of our kids are, are lucky to have some amazing women. And we're lucky to have each other so.
Lauren Fenton 1:06:41
Yay! Well, thank you. And as we've started to do on the podcast more recently, as well, we will ask you to close with telling us what your F**king Normal is.
Caroline MacPake 1:06:54
So my f**king normal because it seems to happen every morning is being woken up at 3am to a tap, tap, tap on my shoulder. And a little voice goes, Mummy. And I immediately go, Oh, my God, it's 3am. But then, very quickly say no, Caroline, you didn't think you'd ever hear her say that. So you know, deal with it. So that's my F**king Normal.
Lauren Fenton 1:07:20
Just I love that. Lots of love to Dottie and to Roo.
Caroline MacPake 1:07:28
And thank you, Caroline. So, so much. It was a blast having you on the Fucking Normal podcast. Thank you so much for having me.
~background music plays~
Lauren Fenton 1:07:38
Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support to parents and carers who share our experiences.
Rina Teslica 1:07:59
So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's fkingnormalpodcast.com. You can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 1:08:23
So thanks so much for listening all the way to the end. We'll see you next time.
~Music continues “wake me up, loud as clouds, all my love for you”
